Don’t know what’s going on?

[Alex_B]

My sugars have been all over the place in recent weeks. From going really low to 2.3 and then going up really high to where the meter just says ‘HI’ and sometimes in the middle. I really don’t know what’s going on because I don’t eat much and sometimes I’m too sick to eat or drink. Don’t know if that’s why but it’s making me feel so sick. I’m scared to upload my sensor as everytime I do the DSNs always say something negative and then I get stressed and make myself sick stressing and worrying about everything. I have a diabetes appointment on Thursday and honestly I’m dreading it. I’ve decided that if they have a go at me again for my sugars I won’t be going back or communicating with them. I always go away from the appointment upset, depressed and really emotional as they know I have a catheter in and I now have it for the rest of my life and I also have bowel problems, I don’t just have diabetes to worry about anymore. My mental health is a lot worse and I’m worried that them having a go at me or saying something negative then it will push me over the edge.

Last week one of my DSNs/dietician told me off for using the hypo kit because my sugars weren’t rising at all and it was looking bad like I was going to go to sleep while trying to eat sweets which can be dangerous. My mum had no choice but to use it. We weren’t going to ring an ambulance because that would stress me out and they’d want me to go to hospital which I refuse to do after my stay in January when a doctor sat on my bed and watched me sleep then continued to tell me I was going to die if I didn’t have the catheter back in. I don’t know what to do. I’m so stressed out which is making everything worse.

 

[DCUKMod]

My sugars have been all over the place in recent weeks. From going really low to 2.3 and then going up really high to where the meter just says ‘HI’ and sometimes in the middle. I really don’t know what’s going on because I don’t eat much and sometimes I’m too sick to eat or drink. Don’t know if that’s why but it’s making me feel so sick. I’m scared to upload my sensor as everytime I do the DSNs always say something negative and then I get stressed and make myself sick stressing and worrying about everything. I have a diabetes appointment on Thursday and honestly I’m dreading it. I’ve decided that if they have a go at me again for my sugars I won’t be going back or communicating with them. I always go away from the appointment upset, depressed and really emotional as they know I have a catheter in and I now have it for the rest of my life and I also have bowel problems, I don’t just have diabetes to worry about anymore. My mental health is a lot worse and I’m worried that them having a go at me or saying something negative then it will push me over the edge.

Last week one of my DSNs/dietician told me off for using the hypo kit because my sugars weren’t rising at all and it was looking bad like I was going to go to sleep while trying to eat sweets which can be dangerous. My mum had no choice but to use it. We weren’t going to ring an ambulance because that would stress me out and they’d want me to go to hospital which I refuse to do after my stay in January when a doctor sat on my bed and watched me sleep then continued to tell me I was going to die if I didn’t have the catheter back in. I don’t know what to do. I’m so stressed out which is making everything worse.

Hi Alex - You do seem to be going through the wars at the moment.

Could anyone, like your Mum, go to the appointment with you, and intervene if the appointment isn't going to well?

 

[Lee farrington]

Oh dear, poor you. I hope your levels settle down soon and you start to feel better soon

 

[Alex_B]

Hi Alex - You do seem to be going through the wars at the moment.

Could anyone, like your Mum, go to the appointment with you, and intervene if the appointment isn't going to well?

my mum is going with me but tbh I’m worried they’ll blame her too.

 

[DCUKMod]

my mum is going with me but tbh I’m worried they’ll blame her too.

But, what is there to be blamed for? Will she not speak up for you both?

 

[Jaylee]

My sugars have been all over the place in recent weeks. From going really low to 2.3 and then going up really high to where the meter just says ‘HI’ and sometimes in the middle. I really don’t know what’s going on because I don’t eat much and sometimes I’m too sick to eat or drink. Don’t know if that’s why but it’s making me feel so sick. I’m scared to upload my sensor as everytime I do the DSNs always say something negative and then I get stressed and make myself sick stressing and worrying about everything. I have a diabetes appointment on Thursday and honestly I’m dreading it. I’ve decided that if they have a go at me again for my sugars I won’t be going back or communicating with them. I always go away from the appointment upset, depressed and really emotional as they know I have a catheter in and I now have it for the rest of my life and I also have bowel problems, I don’t just have diabetes to worry about anymore. My mental health is a lot worse and I’m worried that them having a go at me or saying something negative then it will push me over the edge.

Last week one of my DSNs/dietician told me off for using the hypo kit because my sugars weren’t rising at all and it was looking bad like I was going to go to sleep while trying to eat sweets which can be dangerous. My mum had no choice but to use it. We weren’t going to ring an ambulance because that would stress me out and they’d want me to go to hospital which I refuse to do after my stay in January when a doctor sat on my bed and watched me sleep then continued to tell me I was going to die if I didn’t have the catheter back in. I don’t know what to do. I’m so stressed out which is making everything worse.

Hi,

Sorry to hear you are having a rough time at the moment.

You mention "sensor upload." (Libre??) Are you checking these lows you have against your BG meter?
Sensors can be slow to respond to a BG rise from a hypo.. I'm not sure if you use a scanner or share Libre link from your phone with a nurse? I was requested to share, even though I fund my own.
But I used to mark in the notes on my phone when there appears to be a prolonged low, "the BG meter says, I'm X.y."

Always check errant number on a sensor against your meter & keep notes. It can cover yer back.

Best wishes.

 

[EllieM]

Oh dear, I'm so sorry you're in a bad place. It's good that you have some support from your mum.

First of all, they shouldn't be blaming you for your sugar levels, they should be helping you to balance your insulin so as to improve them. Most of us have periods of less than stellar control (well I do anyway) and the whole point of the appointment is to help you manage that control better. Your multiple health issues are clearly impacting your mental health and you need support rather than censure. And unfortunately blood sugar levels are also impacted by stress, so you're in a vicious circle of stress leading to highs and lows which then lead to more stress.

And if you don't eat enough, for whatever reason, that can lead you into eating disorder territory, which is something you really don't want to add to your overful plate of current issues.

So, maybe be proactive. (Haven't been to a UK clinic for a while so maybe others will intervene if this is a bad idea). Tell them at the start something like
1) your multiple health issues are making you very stressed and ask for help and support
2)

I always go away from the appointment upset, depressed and really emotional as they know I have a catheter in and I now have it for the rest of my life and I also have bowel problems, I don’t just have diabetes to worry about anymore. My mental health is a lot worse and I’m worried that them having a go at me or saying something negative then it will push me over the edge.

Last week one of my DSNs/dietician told me off for using the hypo kit because my sugars weren’t rising at all and it was looking bad like I was going to go to sleep while trying to eat sweets which can be dangerous. My mum had no choice but to use it. We weren’t going to ring an ambulance because that would stress me out and they’d want me to go to hospital which I refuse to do after my stay in January when a doctor sat on my bed and watched me sleep then continued to tell me I was going to die if I didn’t have the catheter back in. I don’t know what to do. I’m so stressed out which is making everything worse.

Maybe print the above out (or paraphrase it) and show it to them at the beginning of the session. Ask them for help.

Clinic visits shouldn't be adversarial, they should be supportive.

3) Your eating issues and lack of appetite. Eating disorders can be induced by restrictive diets (and hence are relatively common in T1 diabetics). They can also happen if you don't eat much for a while (for whatever reason). Hopefully this isn't the case for you but if it is you should try to ask for help.

You're very young and your whole life is ahead of you. Though things seem bad now they don't have to stay like that. COVID has messed up health care for a lot of people this last year, but with a vaccine now available next year should get better. Hang in there, and ask for the help you need and deserve.

Lots of virtual hugs.

 

[Alex_B]

But, what is there to be blamed for? Will she not speak up for you both?

Who knows? They always find some error. She will speak up because she knows it’s better for her to talk than me as I can get angry so it’s best to leave her to do it.

 

[DCUKMod]

Who knows? They always find some error. She will speak up because she knows it’s better for her to talk than me as I can get angry so it’s best to leave her to do it.

Thing is, Alex, their job is to help you to help yourself to stay safe, and well, and where things aren't quite going to plan, help you understand what might be happening, with a view to improving it. It's not their job to work out who to blame, then crack on with the blaming.

I know, from personal experience, when I have been frustrated and things aren't going to plan it can be easy to see every question or comment as being critical, and sometimes, I know I'm not able to remain calm enough to see through to the person trying their best for me.

You have a lot on your plate, and you need to be supported. I'm pleased your Mum is going with you as she may be able to listen better than you. (When I get very frustrated, I don't always hear what's actually being said, I just hear talking at me.)

Hopefully, your appointment will be better than expected, but bottom line is any one of us can only do our best.

 

[Daibell]

Hi. It does sound like your insulins need balancing. I assume you are on Basal/Bolus and carb-counting the Bolus for each meal i.e. varying the dose to suit the carbs in that meal? The Basal should always be balanced first and then try to find the best Bolus ratio to suit the time of day. You mention DSN/Dietician? I always suggest we avoid NHS dieticians as many, sadly, don't understand the subject. I hope you have been advised to be sensible with your carb intake? Whilst some T1s have a high metabolic rate, many like me don't, so i have to keep the carbs down to avoid high insulin doses, BS swings and weight gain. Is your BMI in the good range?